Making Great Strides for Dystonia Research
Despite a challenging year for fundraising, DMRF Canada remains committed to advancing dystonia research now – and in the years to come. This year:
- We awarded the first year of our Two-Year Clinical and Research Fellowship for Movement Disorders with a Specialty in Dystonia, valued at $110,000, to Dr. JiaRen Chai, M.D., at the London Movement Disorders Centre and the University of Western Ontario. Dr. Chai's research is focused on better understanding and improving the effectiveness of clinical treatments available for patients using a novel non-invasive treatment paradigm.
- We partnered with the Banting Foundation to support a Discovery Award. This grant, valued at $30,000, is awarded to researchers in the first three years of their career academic appointment to build a network of young investigators dedicated to the field of dystonia.
Providing Care and Empowering Patients
- We have continued to be a lifeline for thousands in the dystonia community. We designed specialized virtual programs, working with clinicians and researchers to offer dystonia-themed webinars and web-based materials to support patients and caregivers.
- In 2021, DMRF Canada supported more than 50 Support group events over the past year, connecting hundreds of people requiring peer-to-peer support for their dystonia and the challenges of the pandemic.
- We provided timely, personalized phone, and online support to hundreds of queries from concerned parents, caregivers, and patients.
- Recognizing that dystonia can derail a patients’ career path, we awarded the Jackson Mooney Patient Grant, valued at $5,000, to two deserving recipients to accommodate their next steps.
- For the second year in a row, DMRF Canada offered virtual “Yogatonia”, yoga for people with dystonia, to all across Canada in partnership with the Edmonton Support Group.
Advocacy and Awareness
- In 2021, we published two newsletters, five e-newsletters, and distributed over 20,000 dystonia awareness and educational materials to those who needed it most.
- In September, we celebrated Dystonia Awareness Month and connected with over 20,000 people online - our most successful campaign to date. We lit up 16 major landmarks across Canada to show solidarity and highlight the need for support for the dystonia community.
- In June, we hosted our nation-wide, virtual event: Freedom to Move: Run, Walk and Wheel for Dystonia. With participants across 8 provinces, we raised close to $70,000 for dystonia research and patient support programs.
We have done this with just two full-time staff, and by working tirelessly and passionately with our partners, interns, and over 50 volunteers from the community. Without our dedicated community, our achievements would have not been possible, and the support given to 50,000 Canadians living with dystonia would cease to exist.
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